Standing Up To Cancer

Friday evening saw the annual Stand Up to Cancer telethon air on Channel 4. The night is a televised fundraising campaign between Cancer Research UK and Channel 4, that aims to bring people together to speed up progress in life-saving cancer research. Stand Up To Cancer donations help to fund research, which takes developments in the labs and accelerates them into brand new tests and treatments for cancer patients.

The charity telethon concluded late Friday night with the public in the UK having raised an incredible £24 million for cancer research and support, this is a huge £8.6 million increase on the £16 million raised two years ago. What incredible figures! It’s certainly shows the power of television and social media in raising awareness. Some of the patient stories were very emotional and hard hitting, it’s often to strange to think I am one of them, with my place in the stage 4 cancer club fully cemented.

The evening also saw TV appearances from You, Me and the Big C podcast hosts Debs (aka Bowelbabe) and Lauren (aka Girl vs Cancer). It’s great that they are continuing to break down barriers around cancer and the way it’s spoken about. I’d highly recommend the podcast they created with Rachel (aka Big C. Little Me.) for anyone who is unfortunate enough to be going through something similar.

I am debating taking on another hiking challenge next year, and watching parts of the Stand Up to Cancer programme has made me more determined to continue to raise funds and awareness despite my current injury. I have tendinitis in my right heel (most likely triggered from previous challenges including my most recent half marathon). The next trek isn’t until April 2019 so hopefully I’ve got plenty of time to get treatment on my ankle and get fit in preparation to take on the Jurassic Coast trek with Trekstock. Now I know what to expect from the last challenge I’ll need to take on some serious training this time around, perhaps some personal training and HIIT classes as well as waking. Anyone want to join me?

Although I participated in regular walks last time I don’t think anything could have prepared me for the reality of how mental and physically tough the whole weekend climbing the Lake District 5 Peaks was. I was a complete wreck! Still, time is a healer and I am ready for something new. I am determined to keep on standing up to cancer and carrying on as best I can.

Read All About It

A quick blog post to update people on my latest media venture.

A little earlier in the year I was interviewed for Mail On Sunday’s YOU Magazine, and the article comes out this Sunday (22 July).

The piece focusses on my story, talking about my cancer experience so far and how my family and friends have helped me navigate through the toughest journey of my life.

I hope it helps to raise further awareness of what it is like to live with stage 4 cancer, and all the ups and downs that come alongside it. In the article, I talk about my initial diagnosis, treatments so far, my work / life balance and raising money for charities such as Trekstock, who have been a huge help to me over the past couple of years. Nowadays I struggle to remember what it was like to live without cancer, to live my life and not feel as though I am in constant fear every single day. Cancer will always be part of my life, so it’s important to acknowledge that, but it is not all I am about.

If you’re able, do go and pick up a copy and have a read over your breakfast / exercise session / bath on Sunday morning. Thank you so much to the lovely Rosalind, Charlotte and all the team at YOU Magazine.

UPDATE: You can read the online version here

The British 10k

I’ve decided to take on another race, the The British 10k in preparation for my Northampton Half Marathon in September. I know, I know, here I go again…

I recently took part in the Lake District 5 Peak Challenge for Trekstock. I know I’ve since moaned a lot, but It was the most mentally and physically tough challenge I’ve set myself to date, and I’m still a little injured because of it. Despite everything I wouldn’t change a thing.

Completing the 10k will determine if I’m on track for the Half Marathon for The Lewis Foundation in Northampton in September, so I am testing the waters so to speak. I’ve ran a half marathon before however I was much fitter then and the treatment I was having meant I could sustain a good training routine. This time around I haven’t done any running and have hardly set foot in a gym since late last year. My body moves slower than it used to and the frequency of treatment means I suffer debilitating fatigue for days on end.

Despite everything I feel like I have to do something, even raising a small amount could help make a big difference. I know the weather is set to be much nicer than when I did the London Winter Run 18 months ago for Cancer Research UK with family and friends, so that is a bonus.

Over the past few months I’ve been following the story of fellow stage 4 melanoma patient Emily Hayward via Instagram and You Tube and learnt today that she has sadly passed away. I know I am not alone when I say her story touched so many lives, both with or without cancer. I found her vlog really compelling as there are so many parallels with our journeys. She has inspired so many people with her strength and positivity, not just those with Melanoma but others undergoing immunotherapy and chemotherapy too. She maximised the good days, and chatted about making her days matter, and making her life count even though the odds were stacked against her. Emily accepted her diagnosis and lived life to the full every single day. There have been other great Melanoma blogs such as Dear Melanoma and Wrestling Melanoma I’ve followed over the years but sadly those people have since passed away too. Who is to say I won’t be next? No one.

News like this hits home hard! It’s a scary reality and I’m petrified about what may come, in an instant one can realise that life is so fragile, and so bloody unfair. The cancer club is a horrible club to be part of, but it is full of very incredible people.

I need to feel like I’m doing my bit; as I’ve said before it gives me a sense of purpose and focus. I want to make sure my life counts, and make each day really matter, I guess perhaps we only have one life after all?

The NHS is an incredible resource which we are very very lucky to have in the UK, but charities like Trekstock offer support that I haven’t always found elsewhere and feel it’s only right to try to make a difference in the hope it’ll help others like me moving forward, either experiencing a life with cancer, or a life after cancer.

If anyone is free early morning on Sunday 15th July and in central London, do feel free to come and cheer me along during The British 10k. I’m not sure I’ll be running, as I still need rest and don’t have time to train, but even if I’m walking I don’t mind, just as long as I cross the finish line. If anyone does wish to sponsor I’m looking to raise £200 from this event, and will also be raising money in August ahead of the Northampton Half Marathon. A link to my page for the 10k is here.

I’ll never understand why life deals some people such a bad hand; I feel overcome with emotion just thinking about it, and at the moment I’m one of the lucky ones which seems bizarre. Life is short, and I want to live mine to the fullest for as long a possible. I don’t want to waste a moment of this precious life. I just wish I had the answer on how to fix things.

Still hoping for a miracle.

Lake District Five Peaks Challenge

Last weekend I conquered the Lake District 5 Peaks for charity, including England’s highest mountain Scafell Pike in just one day. I did this in aid of Trekstock, a young adult cancer charity I’ve frequently mentioned in my blog.

I found out about Trekstock through social media, and over the last 18 months I’ve found them a great source of support. Through the charity I took part in their RENEW exercise programme and also became involved in the BBC documentary A Time To Live by Sue Bourne. I have also benefited from other events they’ve organised for those who have experienced cancer.

The challenge, organised through the company Charity Challenge was without a doubt one of the hardest things I’ve done in my life! It was the most difficult physical challenge I’ve set myself so far. I was on my feet walking for the best part of 12 and a half hours straight and I found the trek both physically and mentally tough. I felt so many emotions in one short space of time; I laughed and I cried! (A lot!), but I’m proud to say I did it! I was the last person in my challenge group of 44 people to finish on the day, and I’m sure I said I couldn’t do it about 1000 times. My hips and legs became so tired that I had to give up my backpack for the last four hours, and the Charity Challenge team kindly carried it for me. I kept joking that the leaders should apply for World’s Strongest Man as they carried my backpack (as well as their own), whilst navigating across the boulders and rough terrain of the landscape. The whole experience reminded me of the type of person I am; I’m a fairly nervous person, I get scared easily, and the weekend confirmed that I’m certainly not an outdoor enthusiast! It took me longer than average to learn to swim, ride a bike and drive a car, so I shouldn’t be surprised I found the trek tough going! I know I won’t be signing up to adventurer Bear Grylls next TV show in a hurry.

Despite my initial disappointment at finishing last, I have to remind myself it wasn’t a race, I also had chemotherapy last Monday, so I know I should be especially proud. Initially it felt bitter sweet; the challenge reminded me that I am not invincible, and that having stage 4 cancer means I will inevitably find it difficult to do things that a healthy person could do more easily. As first I felt really upset, as it was a reality check, but it hindsight I’m just glad to have finished.

I’m still very sore and in pain, and pretty sure I’m going to loose a toenail but it was worth it!  Without sounding like an awards acceptance speech; I am grateful to my two wonderful friends that completed the trek with me (they must be mad!), I’ve never been so happy to see two people before. Huge thanks to the Charity Challenge team who made sure I powered through, and of course to the lovely Trekstock team. I know the money raised will continue to make a huge difference to people like me. It was lovely to meet so many other people connected to the charity, who gave me encouragement, supported and cheered me on until the bitter end. I’ll certainly be visiting the Lake District again soon, it isn’t an area of the world I’d visited before, and the landscapes were stunning. It goes to show there is so much beauty in England so close to home, I still have The Travel Bug, but I’d love to explore the UK more.
 At the moment I’m not sure the Lake District 5 Peaks would be something I would do again in a huge rush, but knowing me I’ll probably end of signing up to something else in few weeks. Perhaps I should opt for a simple bake sale instead? Overall I feel a great sense of achievement. and I’ll be riding high on that wave for a while, even if I am still hobbling.

Its great feeling knowing the money raised can make a real difference, helping to improve the physical and psychological wellbeing of people in similar shoes to mine. In total I’ve raised over £1,100 for Trekstock so far, and if you’d still like to donate you can do so here.

I am also delighted to say that I had stable scan results at my oncology appointment last Monday, which is of course fantastic news. Now that I know, I hope I can relax more over the next few months and enjoy my summer adventures and birthday celebrations.

The Waiting Game

I am now playing the waiting game, having had a PET CT scan last week to check for any disease progression. I am keeping everything crossed and hope more than anything that my scan indicates my cancer has remained stable over the past few months.

Due to a Christmas break and Easter holidays It’s been over five months since I had my last scan, so I’ve had an extra long break from the anxiety that usually comes every three months. It’s safe to say if something is wrong I’ll be kicking myself for not having had a PET CT scan sooner.

Luckily I’ve been fairly busy over the past few days, which acts as a good distraction from all things melanoma related, but it doesn’t make the thoughts and feelings go away all together. I’ve had a few nights where I’ve been laying awake panicking about dying, a very real concern, but a very unhealthy thought process.

Waiting for results is the worst past of cancer treatment, my mind races with so many different thoughts it’s hard to keep on the right track and keep a grip on reality. In the past week alone I had three different medical appointments on three separate days, which in itself is exhausting. Having stage 4 cancer is a full time job and it will always be more important than anything else going on in my life.

My last four blood tests have shown I’m suffering from anaemia, which is not at all unusual for me, but is a bit of red flag. I’m normally boarder line when it comes to my haemoglobin levels, so I’m now taking iron tablets prescribed by my GP religiously in the hope they will help me feel less exhausted. I’m off to the Lake District to do the 5 Peak Challenge for Trekstock next week so I need to be on top form. I just hope it doesn’t lead to a blood transfusion!

When I had my PET CT scan last week I had a problem with my portacath. Over the last 12 months It’s been completely reliable, taking away the anxiety and stress of having a cannula fitted or blood taken every few weeks. Despite the nurses best attempts my portacath refused to bleed back, even though it was flushing normally. In the end I had to have the radioactive tracer for the scan injected via a vein in my arm, which was not ideal, as I have the world’s most pathetic small and thin veins! Luckily it was fine in the end, however there was probably about 20 minutes of failed attempts when my anxiety levels were through the roof (I previously had a couple of extremely bad scan related experiences).

Hopefully my portacath was just having an off day and will flush ok when I go for my next chemo appointment, otherwise I may need medicine to help unblock it! It’s the least of my issues but certainly adds to the stress of the whole treatment process.

Keeping everything crossed for my results!

World Cancer Day

Today is World Cancer Day. World Cancer Day takes place every year on 4th February and aims to save millions of preventable deaths each year by raising awareness and education about cancer, and pressing organisations across the world to take action against the disease. According to the Cancer Research UK website, Cancer is the biggest killer worldwide. however research has helped double survival rates in the last 40 years. The day is an ideal opportunity to spread the word and raise the profile of cancer in people’s minds and in the media.

Some game changing cancer treatments, such as Pembrolizumab, the Immunotherapy drug I am currently receiving have only been available in more recent years. My situation would have been very different if I had been diagnosed earlier in life. It’s incredible to think how much the treatment process for melanoma has changed over the last decade. Although huge progress has been made, treatments are painful, debilitating, and for others like me they are long-term.

Sharing my own story doesn’t always come easy to me, as I can be a fairly private person, but I know that is for the benefit of others as well as myself. In some ways blogging about my journey is part of my grief process for the life I once had; expressing myself through my writing is something I previously didn’t think was possible. I really want to make sure something good comes out of this horrific situation.

For me, the metaphorical and physical scars will never been healed; its is as though I am a puzzle which now has a few missing pieces that will never be fully complete again. When I was initially diagnosis with melanoma at 18 I felt my life was over before it had started, but its thanks to pioneering research that I am still here at 30. I know I am one of the lucky ones. Perhaps I don’t fulfil the typical demographic when it comes to my cancer journey, but what is actually considered normal? As they say, so far so good. I have my good and bad days, but I thank my lucky stars every day that I am still alive.

I passionately believe we need to continue research to help find a cure for this awful disease and am beyond grateful to those who dedicate their lives to finding it. I have huge respect for those who continue to raise funds and awareness of all forms of cancer. both individuals and charities such as Cancer Research UK, Macmillan Cancer Support and Trekstock. One day I know a positive result will come from all the hard work.

New Year Challenges

After deciding against another running challenge in 2018, my lovely school friend Emilie has taken one on and is doing the Brighton Marathon to raise funds for Macmillan in April. I’m proud of one of my oldest friend for taking on this marathon challenge  (pun intended) and I’ll be going to cheer her on during the race. You can find out Em’s story here.

Macmillan have been a huge source of support for me, from my Skin Cancer specialist nurse to various online resources and assistance with various different application forms. I’m really appreciate Emilie’s dedication to a cause that’s so close to home. Later in the year I am going abroad for her wedding to be a bridesmaid so it’s set to be an epic 2018.

I’ve decided take on a different challenge in the new year and I am hoping to do the Lake District 5 Peak Challenge with Trekstock later in the year. I’ve never been to the Lake District before, so I thought it would be a great way of doing something new whilst also raising awareness for young people like me experiencing cancer. Over the past 15 months I’ve received a lot of support from the small London based team which has been invaluable. The challenge runs over one day. The climb goes up to over 3,000 feet, covering approximately 14 miles. I need to work out some sort of training that might help. Any one up for a walk around Hyde Park with a large backpack?

I am seeing in the new year by relaxing at home, which seems like a nice chilled out end to 2017. I am keeping everything crossed that my cancer will continue to be stable in 2018 as I have new opportunities and adventures in the pipe line!

Maintaining Mental Health

I’ve learnt a lot about the importance of exercise and it’s health benefits over the last few years. This has been most important in terms of my mental health.

I’ve dabbled at being a gym goer from time to time over the years, but it was only really about two and a half years ago, after my first bowel operation that I began going to yoga and pilates classes. Right now I am not really able to exercise in the same way I did 18 months ago, I feel much more fatigued on immunotherapy drug Pembrolizumab than I did when I was taking oral drug Vemurafenib. This is largely due to the frequency of the three week treatment cycles. I often feel too tired and lack the energy to exert myself, however I know that maintaining a good but gentle exercise routine will have huge benefits on my mental state and health as I move forward. In one of my previous posts, What Having Cancer Has Taught Me I wrote about the need to be kind to my body and not expect so much in the weeks post infusion.

Allowing myself to do some gentle exercise such as yoga, or go for a pre-work 5k jog along the Regent’s Canal gives me a short break from thinking about illness, and shows me that my body is capable of fighting back. Doing this is a great form of escapism, I’m trying so hard to concentrate of my breathing I don’t have time to think about anything else! I don’t ever finish an gym session or short jog and wish I hadn’t done it, it is common knowledge that exercise releases endorphins, so it makes me feel good that I am challenging myself.

I’ve been involved with young adult cancer charity Trekstock since Autumn last year. It is through this charity that I took part in RENEW,  a free 12 week exercise programme for young adults affected by cancer. Taking part in this gave me the opportunity to work with a top-level personal trainer and develop a tailor made exercise plan I could easily follow. Over the course of the 12 weeks I received complimentary gym membership to YMCA Club on Tottenham Court Road, and had frequent sessions with a wonderful trainer called Victoria. I decided to start the programme as I had been going to the gym regularly until my most recent bowel operation in May 2016. I had even taken part in a half marathon, but once I’d had the operation felt it I no longer had the motivation to exercise. After all, I’d be exercising for almost two years and I’d still become really unwell again, I felt deflated and wondered why I bothered in the first place. What was the point? It’s wasn’t going to cure me.

Taking part in this programme has taught me how to work with my body, not against it. I know I can’t push it too hard, but I don’t always have to be breaking out in a sweat to make a difference. Mentally it has really helped me to keep a positive outlook. RENEW gave me the confidence to start exercising again, and I’ve since ran a 10k for Cancer Research UK. Being part of the programme was instrumental in my decision to take part in the run and have a new goal to aim for. I am pleased to say I am now back into a semi-regular gym and yoga class routine, often attending a great yoga studio East of Eden in East London. The key to this is that I don’t beat myself up if I don’t have time to go for a few days, its simply not worth it. My body needs rest as sleep as much as it does exercise. The 6am wake up calls just aren’t worth It when I crave sleep.

Even though the routine is often slightly sporadic, keeping up exercise is very important to me, it allows me to have some control over how I feel, and being part of the Trekstock programme has definitely made me feel motivated. For me, It’s not about aesthetic goals at all, I read a quote on Instagram recently that said ‘Don’t miss out on 95% or your life just to weigh 5% less’, I couldn’t agree more. The important part is feeling good within myself.

Cancer has knocked my confidence a thousand times over, especially loosing my hair and my skin becoming overly sensitive. There was a time when this first started happening that I was constantly plagued by thoughts that people around me were looking at me, and they could tell I was unwell. It’s amazing how much a little exercise can help mental wellbeing and motivate me.

Having cancer is mentally draining to say the least, and the frequency of doctors appointments and hospital visits often add to my anxiety. However, I look at life with a ‘glass half full’ attitude, and the programme has really helped me continue this. I know a lot of people who aren’t so positive, which I do find frustrating at times. I could do nothing and laze around all day, and that’s fine occasionally, but it won’t be any good in the long term. I need to focus on the future and expect that I will be on this earth for a long time to come. If not then where does that leave me? I’ll only be negative and undoubtedly feel much worse. I’d encourage everyone to take on the ‘glass half ful attitude’, focus on the good in life rather than dwelling on what is missing.

 

Why I Make It Work

I recently took part in an online Facebook Live Q&A on behalf of Trekstock with Barbara Wilson, the founder of Working With Cancer. Work has always been a very important to me since my initial diagnosis, and over the past six years it has offered me a sense of purpose and an opportunity to focus on something outside of the relentless cycle of hospital appointments.

Since graduating from University, I have moved jobs a couple of times and was, until recently, in full time employment. I started working part time in July 2016 when I began receiving Pembrolizumab, which requires hospital visits every three weeks, rather than my previous cycle of once a month. Although it was devastating to reduce my hours as I felt as though I was letting go of control of my situation, I knew that it would be for my own benefit. I am pretty sure that nobody on their death bed has ever said that they wish they had worked harder during their lifetime. The work / life balance is much needed in order for me to cope with the treatment cycle and also to do things for myself. Asking the questions on behalf of the Trekstock Network reminded me of just how important this is for me.

I am certain that without the focus of work, I would not have had the determination to bounce back so quickly from operations and treatment. This has made the prospect of work even more meaningful than before. Over the years I have had various stints of time off work, the longest being when I was initially diagnosed with stage 4 melanoma in 2010. I left my first graduate job for a period of six months to recover from having both brain and lung tumours removed. I needed to be at home with family whilst I got better, but I yearned for a sense of normality, and looked forward to returning to a familiar routine, and having my independence reinstated. I had only been employed for a very short time before I had to take this time off, so I felt very short changed. As mentioned in my first post 11 Years, It was not the post graduate success story that I had set out for myself. Despite not having known the team for very long, returning to work made me feel as though I had never left, and they  became some of my closest friends. I found the transition back a huge challenge on both a physical and mental level.  Despite any distance that may have come between us over the years, we shared an experience which has sealed our bond of friendship forever.

Once again another six months of my life has been so easily swallowed up by hospital visits and cancer treatment. This is it. This is my life and my future. Most people get bored of their work routine, but for me it makes me happy to have a reason to get out of bed three mornings a week; a reason completely unrelated to my illness. I want to live as normal a life as possible.  To be someone who goes to work just like the majority of the population my age is key. I like living in London and enjoy my routine, sometimes it can be a little boring, but it beats living at home with one of my parents and not working. I feel that if I had decided to stay at home long term after my operations six years ago, my attitude and outlook would be very different. Work is a huge factor in this. My job might not be rocket science compared to others, but it certainly keeps me sane. Why should my life be any different? It helps me to feel needed and as though I make some sort of difference. I know that when the time comes for me to give up work completely I will know that I am on a downhill slope.

Whilst recovering from  my second bowel operation in May 2016, time seemed to go really slowly, and yet looking back, these last six months as a whole has seemed to pass me by with no clear definining moments other than those which revolve around illness. It sounds negative and depressing when written down, but If anything It has made me realise what really matters and what I most value. Most of the time I don’t feel depressed about it, just determined to put it all behind me as quickly as possible. I know that I can never fully move on, as I will never be cured of cancer, but I would like to try and finish one chapter and start another which I am hoping will not be as bad as the previous one.

Of course, starting a new chapter is dependent on what happens when I have my next PET CT scan which will be towards the end of January. I do know that I will keep working for as long as I am able, I am certain about that. I make it work because having a job is an amazing outlet for me, and makes me feel relatively normal.